Hepatitis C patients risk their lives in wait for government to subsidise new drugs: study

People infected with hepatitis C are choosing not to have treatment, at the risk of the virus becoming life-threatening, because they are waiting for the government to subsidise drugs that are more likely to cure them, a study says.

The study, presented at the Gastro 2015 Conference in Brisbane on Wednesday, said fewer patients with hepatitis C were attending clinics for existing interferon therapies, which have debilitating side effects.

Health advocacy groups want the new drugs to be listed before the end of the year. Photo: Michel O'Sullivan

The study of two groups of 100 clinic patients found 52 per cent had treatment in 2011, compared with 24 per cent of people in 2015.

Co-author Dr Diana Lewis said most of Australia's 233,000 hepatitis C sufferers were choosing to defer their treatment, with doctors advising patients to wait for new and more effective hepatitis C drugs to be listed on the Pharmaceutical Benefits Scheme.

"It's an awkward time for doctors, because we want to be able to treat people to prevent the progression of their liver diseases," the hepatology fellow at Eastern Health at Melbourne's Monash University said. "But putting people on [treatment with] side effects that are long-lasting and for some have a lower cure rate … makes it unappealing, when it may be only three or six months until we get new therapies."

US pharmaceutical companies that manufacture the new drugs have been negotiating with the Department of Health on an Australian price since the Pharmaceutical Benefits Advisory Committee recommended they be listed for the scheme up to six months ago.

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Twenty-seven health advocacy groups wrote an open letter to Health Minister Sussan Ley this week urging her to intervene to speed up the negotiations. They want the drugs to be listed before the end of the year.

Helen Tyrrell, chief executive of Hepatitis Australia, called the drugs "ground-breaking": "Listing these new drugs will enable us to get to a point within my lifetime where hepatitis C is a rare disease. That is phenomenal and so rarely occurs."

"Every month of delay, we've got 250 people who will develop serious and potentially life-threatening disease. It makes no sense."

Dr Lewis said: "Every year more people are getting infected than are being cured. It's an exponential problem that over time is going to cost more."

Current treatments had debilitating flu-like side effects, involved weekly injections for up to a year, and gave patients between a 40 and 80 per cent chance of being cured, she said.

The four new hepatitis C drugs – Ledipasvir, Daklinza​, Sovaldi and Viekira Pak – had a 90 per cent cure rate. All are available for private sale at full price, and are equally effective for those who have not been cured by interferon therapies.

Two of the patients studied had liver failure while they waited for the new drugs. Neither was able to receive interferon treatment: One had a severe psychiatric history, which made them more susceptible to suicide during treatment, and the other was so ill that the treatment may have killed them.

Ms Ley said the Coalition was committed to listing medicines as soon as possible after they received approval by the committee.

"Since coming to office we've listed more than double the number of new medicines on the Pharmaceutical Benefits Scheme as Labor did in half the time and we will continue to do so."

The study was co-authored by Dr John Lubel, the Director of Hepatology at Eastern Health.